Saturday, March 27, 2010

The long haul

Okay, so my imagination was bigger than my common sense. I had big plans of keeping in touch, updating on our progress throughout the diet, etc. Obviously, I underestimated the time this would require. Still totally worth it though!

We continue to see improvements. Not as steady or as huge as I anticipated, but they're there nonetheless. That's good enough for me to settle into this for the long haul.

The thing I really really love about this diet...That there are SO many variables. So if something's not working, there are many areas to explore and tweak. It can certainly get overwhelming at times as far as knowing where to look for problems...but it's not like a med where you try it and that's that. Triggers for seizures can be in the food, meds, fluids, calories, timing, meal spacing, ratio...I could go on and on. So, for me, I feel like there's always a light at the end of the tunnel.

What I hate...the portion sizes and the redundancy. I'm not completely sure where Austin ranked in the appetite department compared to other kids his age before the diet, but these amounts are definitely not what he's used to. He always seems hungry, even after our efforts to address this. He cries when meals are over or when he knows it's getting time to eat. It's hard denying food to him when I know that's what he wants. Even fluids are restricted. And I hate that we have to cycle through the same boring meals over and over. We don't have access to the nifty KetoCalculator yet, so I'm stuck with our dietitian's handful of meals. I've found a few recipes online that I've asked her to calculate for us, but that becomes a pain. Wish I could do it myself.

There are trade offs for sure. I would gladly trade in my free time to prepare his meals for even a little seizure control. Good days are down to the 50ish range. Bad ones...about 100. I remember when the good days were at least 100. I have to remind myself of that every time he has a bad day. The spontaneous full body drops are gone. There's been only one incident since we started the diet and that's even questionable, since I didn't see him fall. He tends to trip a lot as his balance has never been on the stable side. The head rocking has almost completely subsided. I'm not sure if I ever got into this in detail on here, but he would have these moments that he would fixate on an object in his hand or his hands and rock his head from side to side -states we couldn't snap him out of. They were always associated with seizures in the beginning, but it became so frequent that nearly every time he was still he would do it. It's very rare for him to do it now, and if he does, it's very brief.

We decided to wean him off Lamictal. What a terrible med for him. It did nothing but produce side effects and possibly more seizures. Only two more weeks to go on the wean. Yeah!!

So, we are very pleased with the results so far. We didn't get to bring him home from the hospital seizure free, but we did bring home tons of hope for it in the future.

We'll most likely be sticking with it for a while.

3 comments:

JSmith5780 said...

I am glad things are going in a positive direction! I just hope they get better and better.

baby trevor's mommy said...

Ditto on Jen!

xoxo

...danielle

Cathy said...

Hang in there Holly. When will you have access to the Keto Calculator? This will be a life saver for you! Creating meals with your son will help him a ton. The portion sizes are considerably less because they are so dense in calories. Be assured it fills his tummy. However, right now his tummy is still shrinking in size. It will take a few months for his entire body and his mind to adjust. The crying and the sadness will end. His mind will forget what "sweet" means and tastes like. He will adapt. You are in the most difficult stage of the diet right now. I call it the "withdrawal" phase. It will subside but you have to be consistent and strong!!! You can do it! Have a great day!